Two year old Gavin, was born with Leber’s Congenital Amaurosis (LCA). There is no cure, but we are helping to try to change that. This blog was started within 48 hours of receiving his diagnosis, at 4 months of age. It documents the triumphs, struggles and joys of raising a child, who happens to be blind.

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Wednesday, September 23, 2009

Dr. Bill and eye pressing series

As many of you, who are faithful readers (are there really any out there?) know, my huge obstacle right now is the eye pressing (eye pushing, eye rubbing, etc.). Gavin, on some days digs so hard in his eyes, he leaves marks, his eye socket gets bruised, and his eye balls actually get and look very irritated and red, and they start tearing. Beyond that, his eyes appear very sunken, and his face does look distorted. I have been noticing more and more looking back at pictures from just a few months ago, how the shape of his face does appear to look different. I thought it was just me, and he is getting older, so obviously I know facial characteristics begin to grow and appear different and change. Tonight, however, I learned some new facts about eye pressing from Dr. Bill Takeshita. (The story about Dr. Bill is fascinating, he is the Chief of Optometric Services at the Center for the Partially Sighted. He was fully sighted eye care professional, who is now visually impaired).

We had a small conference, and had some parents who had children who are visually impaired (most of them were parents of LCA children), actually I believe all were. Anyway, Dr. Bill discussed some facts about eye pressing. I learned a lot, and thought it was imperative to share and be able for me to look back at this post, and remind myself of a few things.

I realized I need to restructure some things in my life that I have taken on. His eye pressing, has gotten that bad. I am in tears daily. Many times a day. We do our play, and our interaction, and after a minute he's done.

My job every minute, every hour, of every day is keeping hands occupied.

He is getting older, so I don't have this baby on my hands anymore like I did a few months ago. I have a curious beginning stages of a toddler on my hands, who is blind. It's nice to hear other mothers from tonight, even though we have all previously met and discussed this frustration. As a parent with a child with a disability, I am not put on a pedestal, and I did not lose my right to get agitated, irritated and frustrated. I do. I handle it appropriately, but I break down every day. The eye pressing has gotten to that point and that bad. It is haulting some motor skills, because he is totally content to sit in a room and his fists in his eyes. He would be perfectly content with doing that hours on end. I'm not joking. I, however, pull his hands away so we can work (play), he gets irritated, so I redirect him, to get his focus back, and we begin working again, he's over it, fists goes in the eyes, and the cycle continues.Dr. Bill explained the reason behind the eye pushing (pressing), and as I have previously heard before, they see streaks or glimpses of light when you apply pressure to the retina. This is Gavin's way of "seeing", he is stimulated by the flashes of light you can say. I know there are other theories behind this as well. You can do some damage if pressure is too forceful (which Gavin's is). You can damage the surrounding bones around the eye, and not allow them to grow properly (causing some distortment in the face). You can actually thoroughly damage the eyeball, as well as cause the eyes to be pushed very far back in the head.

What can you do to help this?

We bounced many things back and forth, many great ideas were brought forward. We are going to look into Snuggle Wraps, which my friend, Kris already mentioned to me a few months back. As well as REC specs, the goggle type glasses athletes wear. I heard they have cute color ones for children at a Child's View. Gavin, as little (and spunky) as he is, grabs a hold of his glasses and tosses them. The older little ones, I hear are actually getting their little fingers and sticking them under their glasses and pressing. The wraps are for a last resort, but it is something we need to buy for those days when it's really bad and Gavin is doing himself serious harm to his eyes and needs to be restrained for a short period of a time. I know it sounds barbaric, but compared to the damage he is causing his eyes, bones and face as a whole - it doesn't seem like there is another alternative for those moments.

Another thing is the lumination in your home. LIGHT IT UP! Maximize and stimulate your childs remaining vision so they do not get bored and resort to eye pressing (even if they only see light). Suggestions included, paint walls white/off white. Track lighting, torchiere lamps, etc... Even a corner of the room with some poster board that is white and illuminated with lamps to give them their spot in the room where their vision can be maximized, hopefully stimulated, and eye pressing down (make sure light is diffused or you will bleach out the area). You, however do not want the light to be blinding, this will have an adverse effect. You can also use grey sheets, blankets, when your child is on the floor. One of the parents even suggested maybe a type of bracelet that makes noise or has a small bell on it, that reminds them to put their hands down, since it is a reaction for those who do this behavior, almost as if they don't know they are doing it. Other parents suggested reward boards, for keeping their hands down, and a treat for going periods of time, and eventually spanning that time out. Gavin will roll to his tummy and rest his entire head, even body on his fists. Looking back now, Gavin's room is not lit up, his walls are a very neutral beige, the carpet is beige, his furniture is a light wood, etc.... We have some work to do here, and when Dr. Bill was talking about this, I felt like an idiot! I had a DUH moment, like really... I should have known that! It's pretty obvious. I didn't, and it's part of this live and learn, and share attitude.

I applaud all of you who struggle with this. I know Gavin's age is at a very difficult one, he is not walking, so he is not too mobile to keep his hands occupied. I know as he does more, this may diminish for some time, but I know the parents who have children who are older than Gavin, struggle so badly with this behavior. Dr. Bill expressed, it's something you do need to break, and you do need to stop the behavior. That being said, we at home, have decided to restructure things we/I have taken on and I need to concentrate even more time with him, to break this. My full time job is "keeping his hands down" and occupied. My new job will be the same, but coming up with new ideas to keep him stimulated so we break this. Wish us luck, and I wish all you parents the same.

PS.. If you were in on the conference, and I left some info out, please let me know so I can include it.. thank you!

3 comments:

I am one of your faithful readers :) I am learning so much by reading all of this. I would have never thought about changing his room either. It's so great that you are making yourself so educated for your son. You are such a great Mom for all you do!

Hi Jen,I am SO Sorry that you are struggling with this. We love your blog--thank you for educating the rest of us. Our four month old daughter has started eye rubbing too. We're waiting for an ERG to get a diagnosis for her. We just got her glasses and we hope they help. We've just been taking her hands out of her eyes when we notice it. We'd love to hear about different things you're trying. Thanks for all of the great info!